This is what I was looking for yesterday and could not find. It is a letter a wrote for family and friends when I first got diagnosed with FMS. All I wanted from people was to understand what I was going thru as it is such an invisible condition as it does not disfigure joints like arthritis does.
To my family and friends
I have Fibromyalgia
You think I am imagining my pain and say it’s all in my head.
I would like you to imagine for just a while you are going thru what I am.
Think of the worse dose of the ‘flu you have ever had, double the joint, muscle pain and temperature changes and headaches you had and imagine living with that level of pain all day, every day
Imagine never feeling good, sometimes nauseous and dizzy when you know of no reason not to feel good.
Imagine feeling pain in multiple areas of your body for no apparent reason.
Imagine having the pain of exercise muscle burn that normally last a short time, last for hours or days on end and not from doing exercise.
Imagine having knives or needles jabbing you in random places so severely you call out in shock and pain.
Imagine your skin being scalded and so sore to touch and imagine tight bands around your ribs and head.
Imagine having a half-formed cramp in you leg, bum, arm or back muscles that lasts for hours and makes it hurt to move and breathe.
Imagine having fingers that no longer have fine motor dexterity which causes you to drop things or struggle picking things up.
Imagine feeling like your verbal and motor skills are impaired when they were fine a minute ago. You can see the word you want to say, but you can’t say it. Your short-term memory goes out the window and your concentration is no existent.
Imagine feeling like you have missed sleep for a week when you have just gotten out of bed. It’s hard to get to sleep because of pain, but even harder to get up. I often need an afternoon nap, or a quiet time. I often struggle not to fall asleep at strange times and places.
Imagine loud voices, music or tv are like shafts of pain thru your head. That’s how it is some days
Imagine something going wrong with your body everyday, when you have done nothing out of the ordinary.
Imagine having uncontrollable shakes and tremors and shocks of pain run through you, and disappear as quickly as they came; leaving you awaiting their return. This happens all the time and the first one when you wake in the morning and move as little as a finger can be like being hit buy a bus. It’s momentary complete sheet of pain right thru the body.
Imaging having to live a “normal” life in society, yet knowing your abnormalities will mess that up for you anytime of any day. Worse still, try explaining to people what you have and see the ‘oh yeah, mental issues’ look. No one believes what we go thru and think we are imagining or putting it on.
Imagine striving to be the best Mother and Wife you could be and being left to feel useless many times over awaiting to feel normal again.
Imagine having the hard word put on you when you are in a lot of pain. Yes we do lose our libido, sex expends a lot of energy we don’t have and we need a lot of gentle persuading to get going. Oh and PMS and menopause do increase the symptoms as does any form of stress or high emotions increase pain.
Imagine how it feels for me to have people telling me to get moving, stop being silly, take another antidepressant or get back to work as if it is my fault I am like this. I can not work. No employer wants an employee who some days is fine and coherent and the next is riddled with pain and can hardly string two words together because of brain fog. Its is a hard to explain illness and as it has no visible signs
You have now imagined what it is like to be me. I live with Fibromyalgia, could you?
I ask that you understand what I am going thru. I am not asking for constant sympathy but just that you understand and accept that what I have is real and painful and very hard to deal with or understand. I take painkillers but they really don’t ease the pain, some make me care a little less about it though.
Don’t chastise me for not doing things, ask me if you could help me. Many simple jobs are very hard to do some days, like peeling and mashing potatoes, changing the sheets on the bed, hanging wet laundry on the line, vacuuming, lifting things out of the oven, emptying the bottom drawer of the dishwasher, doing up buttons and my bra. I do not want or deserve ridicule because I haven’t done much today. You saw how well I did yesterday or the day before and tomorrow I might well be able to do it again. If not, either help me or shut up. I have learnt not to sweat the little things, if they bother you so much, you do them.
But please remember above all, I am still you wife, mother, sister, best friend and I want to remain that way. You loved and respected me before I got this, so please accept me as I am and work with me, not against me. I still love gentle hugs, love a day out and love being with you. All I ask is that you understand this illness and work with me to cope with life and constant pain. I am still the same person, just a lot slower to react and do things.
Help me, don’t fight me. Just keep loving me, but allow for my bad days and like me, hope tomorrow is better.
Fibro is not easy for others to accept as they see we look ‘normal’ and can often be ‘normal’, it is just a shame it doesn’t show up like a broken leg or arm does.
I have decided I am to be a ‘survivor’ of Fibro and not a sufferer. Oh yes, I suffer with pain, but I don’t let it rule my life. I go with the flow and face each day as it comes and work according to my ability on the day. I have good days, I have bad days. I race around and do things on my good days, the bad ones I dose up on meds and curl up with a book or sleep. I am very lucky in one respect, as I do not suffer from depression as so many do. Yes I have had bouts in the past 10 yrs, but I find understanding fibro and accepting my limitations have been a good way around it. My doctor also adds it not really in my disposition to be down for long. I am a pretty analytical person with a medical background so I do understand what Fibro does to me. I’ll try to explain so it might help you and particularly Norm understand.
“One of the underlying causes of fibromyalgia is a change in brain chemistry from distress in the central nervous system. (it has been discovered we have a decreased blood flow to a region in our brain that causes pain) People who suffer from fibromyalgia experience exaggerated pain in at least eleven of eighteen trigger points and a wide range of associated symptoms ranging from migraine headaches, chronic fatigue, and jaw and joint pain to irritable bowel and PMS. It feels like sufferers have the flu all the time with a low-grade fever and sometimes cold hands and feet. Also included are sleep disturbances, fibro fog (a loss of mental clarity), chronic fatigue and episodes where over-activity will bring on a complete collapse that takes from days to weeks to recover. The disease is complicated by the pain which causes irritability, the depression, the anger, sadness and the feelings of being helpless and hopeless, and finally a resigned detached sense of giving up.”
It is estimated that 7 to 10 million Americans–mostly female–suffer from FMS (fibromyalgia syndrome). The median age of onset is 29 to 37 years. It can begin spontaneously or after an injury, particularly when associated with serious emotional stress, a history of spinal injuries. Fibromyalgia is characterized by a consistent pattern of non-restorative sleep or insomnia, widespread body pain and stiffness, chronic fatigue and varying degrees of anxiety and depression. Other symptoms may include difficulty concentrating (“fibro fog”), slurred speech, irritable bowel syndrome (IBS), light sensitivity, PMS, tension and migraine headaches, environmental sensitivities, TMJ, tinnitus, irritability and mood swings. FMS symptoms are aggravated by stress. Most sufferers even experience pain while resting, and the pain is most noticeable when they have used their muscles for repetitive activity. The pain can be so severe that they can no longer work or do ordinary tasks. Pain killers have little effect.
The above paragraphs sum it up pretty well, but does not explain the many varied pains and levels of pains we have. I use the one to ten system and grade my day by that. You think of 10 as the worst pain you have ever experienced (childbirth, accident etc) and one as no pain (you mean… some people have NO pain?? giggle). I always have some level of pain so I have judged myself to be 3/10 on a normal day. I find it hard to get from standing to sitting and hobble and stagger as I walk (oh I should add I have very loose joints and this has given me very worn joints, my knees and hips are on the watch list for replacement). On my bad days I warn people I am feeling ‘fragile’ and they know to side step a little and not provoke me. Those are the days I need to be left alone or helped out more.
Things I know trigger more pain are – (sorry some of this is a repeat from yesterday post)
- The weather. Sudden changes in barometric pressure and rapid drop in temperature
- Full moon, for about 4-5 days around this time (no, I don’t bay at the moon or turn into a werewolf – did I??)
- Extreme changes in temperature. Last 5 days here have been extreme. (sat 29C, Sun 12C, Mon 24, Tues 8, Wed 27)
- White bread and too much white flour. I have proven this by experience
- Extreme emotion – anger, fear, stress.
- Pushing myself and over working one day, then I crash the next.
- Crying for any reason. This really knocks me about
I have learnt to go with the flow. I try hard to keep set plans and appointments, but otherwise, I do things when I can. On my really bad days, if ken is not working or sleeping (he works nights) he will often take me out maybe for a coffee or a look around a shop or something. The distraction is great. The secret is not to be self-absorbed and having respect from the family. I don’t want or need sympathy, but I do need people to understand I do my best when I can.
I have become a list writer or I forget things badly. I carry a notebook with me to town and have a white board on the wall to put things on I need to ask Ken or need help with or to remember to buy.
I have a great doctor. That is so important as I know there are many fibro’s who have doctors who still dish out antidepressants and think mental issues, with out investigating the reason. Anti-d’s do not help the pain, but do help with sleep. My dosage is to help me sleep. He knows I understand my body and when I go visit, I have a list of things to check with him. He rubs his hands together and grabs my list and goes, fibro, fibro… oh hello what’s this? Explain? Fibro does have so many symptoms that it can mask other things so it is important when I go to him, to have this list. I also take any info I have found on meds that are said to help fibro and we talk about them. I know some people are being given anti seizure meds which reduce the overactive pain stimulus we have. My Dr likes my questioning and analytical nature and often says my sense of humour is great. Has to be, would be a miserable world if I could not laugh or make others laugh.
When asked how I am, I do not give people a moan of pain, I just say – am not so good today but tomorrow is another day. I rarely try to explain fibro to people. I just say I have a condition that effects my muscles and joints and gives me an awful lot of pain. Most people want to know the details and if u try to explain… u see their eyes glaze over and can see them imagining you in a padded room.
You have to keep your brain active as I am afraid the Alzheimer gods visit us earlier than ‘normal’ people. I am studying for a diploma in Horticulture. I do soduku, cross word and logic puzzles, watch NatGeo and informative tv all to keep my brain stimulated. That’s the secret for us to keep our brain active even when the body is aching.I crochet and type long letters to friends and my daughter over seas to keep my hands active. I have started aqua exercise at the local pool as it is said to be very, very beneficial to us – gentle and supportive exercise unlike gym type activities or jogging.
OK that’s more than enough about me. I have some seeds to plant so I had better go do it.